TwitchyDoc wrote:I suspect that this is stress related (worsened), one person PMed me about a person diagnosed on the other forum with dirty EMG, fasciculations, cramps but no weakness at all. I tried to not think about it but ....

Yeah, you tried not to think about it, but instead you decided to post it here so that everyone else can think about it? Little bits of information, lacking full details, but just enough to scare the crap out of people already trying to deal with anxiety.

johny, wjjw: No offence but please mind what you read. That guy has bad EMG's from the beginning, I have stressed that in my post!What is wrong with you, really...so if I say someone developed ALS with dirty EMG, you are scared? Lol...

TwitchyDoc wrote:johny, wjjw: No offence but please mind what you read. That guy has bad EMG's from the beginning, I have stressed that in my post!What is wrong with you, really...so if I say someone developed ALS with dirty EMG, you are scared? Lol...

Uh.. your post doesn't scare me in the least. What I do know is that mentioning what you did (including the part you "stressed") will raise many people's anxiety needlessly. That partial story about a case that has nothing to do with us offered nothing but the potential for fear. I can't say that I'm surprised you don't understand the impact of such statements. No offense.

johny, it has to do with us - that guy came to this site and was terribly mistreated as he mentiones in his thread..why? Because he does not fit the rule "no weakness=no ALS"? He explains his story on the other forum quite well and I feel really bad for him and how people here behaved. I repeat, he had never had clean EMG so there is no reason for anyone to panic.

TwitchyDoc wrote:johny, wjjw: No offence but please mind what you read. That guy has bad EMG's from the beginning, I have stressed that in my post!What is wrong with you, really...so if I say someone developed ALS with dirty EMG, you are scared? Lol...

Uh.. your post doesn't scare me in the least. What I do know is that mentioning what you did (including the part you "stressed") will raise many people's anxiety needlessly. That partial story about a case that has nothing to do with us offered nothing but the potential for fear. I can't say that I'm surprised you don't understand the impact of such statements. No offense.

And now you just read my mind

He reads something that scares him, regurgitates it in his post, then questions why we think it might actually might cause other people needless anxiety as well!? LOL.

Cheers,Bill

A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein

johnnythejet wrote:I can't say that I'm surprised you don't understand the impact of such statements. No offense.

I'm not either. He'll make a "good" doctor some day. LOL.

Cheers,Bill

A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein

Well S#%&! Without ever having an emg, I guess I can think about slow progressing als, which really I had no idea about..I thought once you experience symptoms it progresses quickly. I have a lot of symptoms but no weakness...I guess all I can do is wait and see.

You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho

LApea wrote:Well S#%&! Without ever having an emg, I guess I can think about slow progressing als, which really I had no idea about..I thought once you experience symptoms it progresses quickly. I have a lot of symptoms but no weakness...I guess all I can do is wait and see.

Please don't let the careless judgement of a should-be vet derail your recovery from this madness. The truth is that EMG's aren't necessary for anyone with our pattern of symtoms and a clean clinical exam. Most EMG's are granted to us by neuros after we request/beg for them or given to us to treat our anxiety. Many of us never even had an EMG. The pattern or our symptoms and clinical examination tells the benign story in full. You absolutely do NOT need to wait and see.

LApea wrote:Well S#%&! Without ever having an emg, I guess I can think about slow progressing als, which really I had no idea about..I thought once you experience symptoms it progresses quickly. I have a lot of symptoms but no weakness...I guess all I can do is wait and see.

Please don't let the careless judgement of a should-be vet derail your recovery from this madness. The truth is that EMG's aren't necessary for anyone with our pattern of symtoms and a clean clinical exam. Most EMG's are granted to us by neuros after we request/beg for them or given to us to treat our anxiety. Many of us never even had an EMG. The pattern or our symptoms and clinical examination tells the benign story in full. You absolutely do NOT need to wait and see.

Thanks Johnny you're always a voice of reason. I just hate when I stumble upon these threads blindly, and read information that screws with my head. My only solution is to stop coming, but I still need the reassurance sometimes, catch 22.

Jay

You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho

LApea wrote:Well S#%&! Without ever having an emg, I guess I can think about slow progressing als, which really I had no idea about..I thought once you experience symptoms it progresses quickly. I have a lot of symptoms but no weakness...I guess all I can do is wait and see.

Don't even think that way. First of all, neurologists don't even know for sure exactly what is wrong with this person, and it seems to be an extremely rare form / presentation. You are 30 years old, and your weird symptoms started after pregnancy, which certainly have an major effect on autoimmune functions. This would be consistent with bfs, which is thought to have autoimmune origins. Please relax.

Cheers,Bill

A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein

LApea wrote:Well S#%&! Without ever having an emg, I guess I can think about slow progressing als, which really I had no idea about..I thought once you experience symptoms it progresses quickly. I have a lot of symptoms but no weakness...I guess all I can do is wait and see.

Don't even think that way. First of all, neurologists don't even know for sure exactly what is wrong with this person, and it seems to be an extremely rare form / presentation. You are 30 years old, and your weird symptoms started after pregnancy, which certainly have an major effect on autoimmune functions. This would be consistent with bfs, which is thought to have autoimmune origins. Please relax.

Cheers,Bill

Another voice of reason, thanks Bill. I do think about how my symptoms started and think there really is no other explanation. It was like a perfect storm brewing during pregnancy to giving birth. Now I'm left with this [email protected], and still trying to come to terms.

Didn't want to hijack the thread, thank you both for bringing me back down to earth.

You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho

LApea wrote:Didn't want to hijack the thread, thank you both for bringing me back down to earth.

I wouldn't worry about it. This thread deserves to be hijacked.

Cheers,Bill

A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein

LApea wrote:Didn't want to hijack the thread, thank you both for bringing me back down to earth.

I wouldn't worry about it. This thread deserves to be hijacked.

Sure, as the poor guy deserved the way you treat him. You are really mean people, some of you. He came here and you offended him, accused him of scaring people just because he was telling his story.And now you are *beep* about my post? Really lame. If you feel somebody could break your "logic" here (unintentionally), you attack him in order to "protect others".I do not care about your comments,you do not change that he has no weakness or functional deficit and still has MND diagnosis based on EMG (which me and Wright have seen).I am just sorry for the way you treat him/me with wanna-be smart replies. You could do good job for China or Korea, they behave the same way - attack anyone who might break their "truth" Enjoy..

TwitchyDoc, I'm with you on that one. This forum sometimes reminds me of a sect where you can't question the wisdom passed down from the founders. Yes, you scared me, too. More than once. But I'd rather have an open discussion than read the "it's all benign no matter what"-posts that don't reassure me at all.

So, someone on the Internet suffers from ALS. It's not you. Get over it. I would welcome a discussion with him here.

Huh, you are risking a lot by saying what you said, here! I was immediately banned from the chat because I told here one influenced member was quite rude to me on the chat (technically not banned but I should never come back either). Saying about the "sect" thing is not really nice. But it is true people here want good stories not bad stories and that it is desirable to bring how you are better, how you are doing fine, how you got clear neuro exam etc.

That is why I am not to popular here, one neuro told me BFS is rare and I don't have it, and I had some atrophy, other one (online neuro) told me my kind of twitch is not BFS twitch etc. I came here to get response from others who DO HAVE BFS and they have reassured me greatly. But they also kind of hate me (maybe it is a too strong word) because I brought some bad news like neuro saying this twitch is not like BFS. While I understand nobody want' to be scared, I look at this forum as place where people with same problems meet and discuss. Yes, even scary things and doctors telling obvious non true things. That things happen, not everybody is reassured by their doctor and I think my story about my "non BFS twitch" is good for others who may have similar stories. I tell you, it wet your pants when you are told by professional that kind of twitch is not like BFS twitches. As others told me it is not true and I believe them. But I do not quite fit the BFS profile when neuro just tells me: You don't have anything, your hand really is not atrophied and you twitching can not be nothing bad. I wish it would happen to me but it didn't.

The reassurance on this forum is much greater if people can also express their bad things that happen, it really is then a place one can believe in. I hope it doesn't become a place where there is only the one right thing to say, it wouldn't offer much reassurance. Not everybody get's calmed by their doctors and can still have what seems to be BFS from the symptoms, at least this seems to be my story and I believe there are others. Being scared can sometimes even make a positive outcome for oneself and for the others. Discusing about wierd and bad studies can also bring calm to many people in the long run, to see that if you are not "all clear" or they "don't know what is wrong", you can also be ok. And that the studies can also be wrong. I think that is what it matters on support sites.